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Lyme disease conference The patient s need for scientific integrity Wendy Fox, Borreliosis and Associated Diseases Awareness UK (BADA) 9 October 2013

Borreliosis & Associated Diseases Awareness UK. A self-funded, volunteer-run, registered charity dedicated to the prevention of tick-borne disease in people and pets throughout the UK and Ireland. Principle activities: Educational exhibits at UK-wide events (e.g. agricultural & country shows, pet events and outdoor pursuits shows). National Tick Bite Prevention Week since 2007. Advise service (tick control, tick removal, tick bite prevention in people and animals, general information on diagnosis and treatment, and emotional support of patients).

Significant lack of awareness about: What ticks are. Where ticks are found. How small ticks can be. Ticks bite people as well as animals. GENERAL PUBLIC DOCTORS VETS Ticks in the UK and Ireland can transmit disease. What Lyme disease is and how it is transmitted. Symptoms. Treatment.

Significant lack of awareness about: What ticks are. Example of ticks sent to BADA-UK for identification Deer Ked - Lipoptena cervi

Significant lack of awareness about: What ticks are. Example of ticks sent to BADA-UK for identification Pond leech - Erpobdella testacea

Significant lack of awareness about: What ticks are. Example of ticks sent to BADA-UK for identification Thrip - (thunderfly / thunderbug)

Significant lack of awareness about: Where ticks are found. New Forest, Exmoor, other woodland or heathland areas of southern England, the Lake District, the Scottish Highlands and Islands, North York moors, Thetford Forest, and the South Downs. Although these are high risk areas for Lyme borreliosis, any area where Ixodid ticks are present should be regarded as a potential risk area. Health Protection Agency Website

Significant lack of awareness about: Where ticks are found. Statements reportedly made by UK GPs in 2012 2013 There s no Lyme disease in the UK. There s no Lyme disease in this area. There are no ticks in the UK. There are no ticks in this area.

Significant lack of awareness about: How small ticks can be. Lyme disease is transmitted by the bite of an infected tick, but many patients do not recall the bite or find a tick on their bodies. Public Health England GP poster

Significant lack of awareness about: Ticks bite people as well as animals.

Significant lack of awareness about: Ticks in the UK and Ireland can transmit disease.

Significant lack of awareness about: What Lyme disease is and how it is transmitted.

Significant lack of awareness about: Symptoms.

Significant lack of awareness about: Symptoms. GPs can be unaware of the variation in erythema migrans. An erythema migrans may not always be observed. Early erythema migrans are often homogeneous.

Patients & doctors can fail to distinguish between the various complications of tick bites. Bite site adult female attached

Bite site immediately after tick removal

24 hours after tick bite - hypersensitivity reaction 14 day course doxycycline prescribed by GP, as if for erythema migrans.

Where do patients go when they lose faith in their GP?

A quagmire of good and bad sources of information

Private testing routes In-house assays - own criteria (difficult for patients to establish the accuracy of tests plus a potential for misleading results). Tests on non-blood samples such as urine (The clinical usefulness of such tests have not been proven). Patients can be left very distressed when the results of unvalidated tests are rejected by clinicians.

Private testing routes Snake Oil

Significant lack of awareness about: Treatment Under-treatment and over-treatment with antibiotics. Inappropriate choice of antibiotics. How to manage post-treatment symptoms. (treatment failure? Post Lyme disease symptoms? Post Lyme disease Syndrome?)

Significant lack of awareness about: Treatment Where can patients end up? Neural Therapy - Brain healing technique Local anaesthetic (Procaine/Novocain) injections into various body points to restore electrochemical function of tissues. Salt / Vitamin C treatment protocol Increasing sodium chloride concentration in the body creates a hostile environment for Lyme bacteria and co-infectors, causing them to die from osmotic shock.

Significant lack of awareness about: Treatment Where can patients end up? Miracle Mineral Supplement (MMS) Kills Lyme bacteria and co-infectors which suppress the immune system and allows the immune system to restore normal function. MMS is a solution of 27-28% sodium chlorite in distilled water to be mixed with citric solution (e.g. lemon / lime juice) = chlorine dioxide (bleach). If you notice diarrhea, or even vomiting that is not necessarily a bad sign. The body is simply throwing off toxins and cleaning itself out. MMS website No randomised, controlled clinical trial to date.

Categories of patients seeking support from BADA-UK: 1. Self diagnosed via Internet no discernible history of tick exposure / bite. 2. Tick bite and / or rash history but told they can t have Lyme borreliosis. 3. Negative test excluded diagnosis. 4. Diagnosed and treated but still have symptoms.

Out of 100 patient support cases between 2012 2013: 60% had pursued NHS diagnosis or were unevaluated. 40% had pursued diagnosis and treatment privately.

Out of 60 patients

Out of 40 patients

Out of 50 patients >12 months post treatment

Patients Failure to practice bite prevention behaviours. Failure to practice correct tick-removal techniques. Failure to recognise early signs and symptoms of Lyme borreliosis. Lack of knowledge about appropriate diagnostic procedures and treatment.

Doctors Ignorance regarding the existence / prevalence of ticks and Lyme borreliosis in the UK and Ireland. Disregarding Lyme borreliosis during patient evaluation. Failure to test when appropriate. Testing when inappropriate. Prescribing inappropriate treatment.

There s a lot we do know. There s a lot we don t know. There s probably more that we don t know we don t know. Recommendations for prophylaxis, diagnosis and treatment should always be evidence based. There is a need for evidence-based information to actively and widely be disseminated, to help combat disease cases and improve patient outcomes. It should be highlighted that further research will help to increase understanding of Lyme borreliosis in the future.

Without the provision of evidence-based information: Prophylactic behaviours are less likely amongst the general public. Doctors may remain misinformed. Patients may pursue unvalidated tests and potentially harmful treatment. A lack of trust in doctors will perpetuate amongst patients.

www.bada-uk.org

Lyme disease conference 9 October 2013